On the Cutting Edge: S minus 7 days!

It's getting close!  In only 7 days, in a room deep inside the University of Steel Medical Center, the Surgeons of Steel will slip their steely scalpels into my schnoz and work their steely magic on the mysterious mass behind my booger blower! (1)

I'm so excited!  This could be the most exciting day of my life, although I plan to sleep through a lot of it.  I'm bringing a big posse: K/BWE,  Dad, Mom, and Aunt Ickey!  The Professor, Willow, and Katie will be holding down the fort with the help of Best-Sister-in-Law Ever (BSLE) and Best Niece Ever (BNE). (2)

Nov. 3, the flight.  'Nuff said.

Nov. 4, visits with various Doctors of Steel, and, I hope a visit to the Natural History Museum of the Magnate of Steel.  The museum has awesome dinosaur skeletons that I have wanted to see since the Professor was called Little Lord Chaos and into that stuff.  (He has moved on, but I have not.)

Nov. 5, the angiogram.  I gotta get up at like 4 in the morning or something.  Doctors are crazy!  They should all be locked up.  Anyway, that particular doc (as -yet-to-be named) will thread a catheter (A different kind of catheter, perverts!) all the way from an artery in my upper arm to my great blood blasting artery (aorta) and taking a turn up my right carotid artery and then some smaller artery I might have learned about in medical school and that almost nobody cares about.  Then, said doc will release tiny beads (probably made of turquoise from New Mexico or something else pretty) into the arteries supplying the part of the mass that is accessible through my nose so I don't bleed to death when they take it out the next day (a net plus).

They're going to keep me in the hospital for the whole rest of the day!  I have no idea why, but I think I heard something about a padded room.

Nov. 6, S minus 0.  Blast off!



P.S. The Professor has cruelly tricked me into watching baseball again.  Now, I can't go to bed before this darn thing is over!






(1)  I'd like to clarify something.  Though they stab it with their steely scalpels, but they just can't kill the beast.(3)  This thing is filling all of my sinuses and the weird, giant, central, brain-draining vein, and it's also right next to my brain.  No surgery will fix that.  Maybe chemo or antifungal medication will.  Maybe if I sacrifice a goat, but I love goats, so, no.

(2) Katie will be in charge of protecting the family from small mammals and birds, and Willow is responsible for protecting against evil forces outside the window, visible only to her and in need of a good barking.

(3) Many of us hate the Eagles.  However, that is a great song.  I do like the Gypsy Kings cover better than the original, but still.

*                    *                    *

I washed Willow this afternoon, for she had rolled in foulness.  It was the worst experience of her entire life, but she seems to have forgiven me.

GAME ON!

Note: a couple of weeks ago, I wrote my most brilliant piece ever. It would have would have won the Nobel Prize for Blogger Blogging.(1) But just as I was about to publish, it disappeared.(2) Alas, what future generations will miss! I had writer's block as I tried to reconstruct it, but more important events have intervened.(3)  This entry was written has a word document before I pasted it here.  Duh.

As Clear as Mud

Remember all that forgetfulness and falling stuff?(4)  Maybe it was a small stroke. Maybe it was the mass growing into my brain. Maybe it was a side effect from the antifungal medication. Or maybe it was from the sandwich I made with the bread that was growing hair.(5)  It was time for an MRI.  An MRI should detect a stroke and can measure tumor growth. It can't detect medication side effects, and it certainly cannot detect the sandwich I made with the bread that was growing hair, but it's a start.  So I had the MRI a week ago.

The doctor called that night to tell me that the mass is growing into the back of my naso-whatsis.(6)  The doctor was so concerned by this that they recommended I consider getting a Percutaneous Endoscopy Placed Gastrostomy (PEG) tube because it would soon become impossible for me to swallow, and thus to get an endoscope down my throat.(7)  The procedure they would use if that happened would be much harder on me. 

The doc then described in disturbing detail how, for a PEG (the gentler procedure), they would shove the endoscope down my esophagus into my stomach.  There, they would shine a light so bright it would be visible from the outside. They would use a scalpel to cut towards the light.  Then they would pull through a tube that looks a little like the alien that burst out of poor John Hurt's stomach and leave it in my stomach, sticking out.  I would then have to use that tube to eat.  Although my grandfather enjoyed the smooth way vodka went down his own PEG, I didn't find the idea enticing in the least. 

After this, K/BWE, Willow the Dog, and I had a little freakout, while the Professor and Katie the Cat obliviously watched baseball. We did feel better in mere minutes when we then joined five of our best friends for our regular Tuesday night online game, where my job is mainly to make other people laugh.

The official MRI report came back the next morning. The radiologist, Dr.Glow, did not notice any significant changes since the last one they have access to--May 2019.  That was before the surgery, so it's a little weird, but when is it not a little weird with me?  Weirder still, they see no sign of tumor inside my braincase at all.  As certain people said in the debate tonight, let me be absolutely clear.  She did see tumor in my nasopharynx and my sinuses just like before.  I called her for clarification about the intracranial part of the mass.  She disagrees with the interpretation of the May, 2019 MRI.  That means that not even the radiologists agree about what's going on.

She did not see a new stroke, which weirds me out.  My symptoms have improved.  That's consistent with stroke, not with tumor or medication reaction.  That leaves hairy bread sandwich.  I guess I'll accept that for now.  I will be curious to know what the folks at the larger hospitals think.

But events have moved fast, and that's no longer where the real action in this story is!

Back to the City of Steel!

That morning, we received a call from the ENT Surgeon of Steel. The Game is on! He and the neurosurgeon have agreed that this surgery will happen! We took the opportunity to press him for details.

First of all, I wanted to reassure myself that this wasn't a crazy move. I asked him how often he and his partner did this kind of surgery.  The answer was, every week for 13 years and similar surgeries every weekday, and they have a good record. That's the kind of answer you want from a surgeon. The single most important factor in determining how confidant you can be in your surgical team is how many times and how often they have done the surgery in question.(8)  This was really good.

I asked where they will get the flap (graft) to patch the hole in my skull.  He said he would look for nearby tissue in the back of my nose. I expressed skepticism since, as I said, I have had an absurd amount of radiation to that area.(9) I reminded him of how much radiation I have had, and asked if he had ever seen someone that had had that amount. "Um, that's a lot." However, he quickly responded by saying that, if necessary, they will take some subcutaneous tissue from under my scalp, drill a little hole somewhere (I forgot to ask exactly WHERE he will be drilling - that seems important! I'll have to ask more about that later), tunnel the tissue and its blood supply under the skin, and pull it through.  Then they would patch it over the hole. 

I swear, I did NOT make this up!  I am very willing to do it, but how did they even conceive of such a weird procedure??

Anyway, they are so used to doing this procedure, that they actually bored with it.  To keep from falling asleep, they hang themselves upside down in the operating room, one hand each holding a paddle for their ping pong game and one hand each doing the surgery.  The ENT Surgeon of Steel is ahead despite the fact that his glasses often fall of during games. (10)

He also thought getting a PEG tube was unnecessary. So much for that idea.

Since then, events have proceded apace.(11)  K/BWE has made the appointments (because she rocks). On November 4, I have an appointment in the City of Steel to get a preoperative evaluation from an internal medicine doc. The next day, I see the surgeons, get my angiogram, and enter the hospital.  On November 6, let the wild rumpus start!

(1) I have the best words!

(2) Thanks, Blogger!

(3) Also, it's distracting to have sports on all weekend. Since the early spring, the Professor has become a sports fanatic, so I'm starting to follow baseball again. Incidentally, true to his nickname, the Professor now knows every fact ever known about baseball, and he's starting on hockey.  I am proud that, since our home city's team didn't make the playoffs, he is rooting for the baseball team of my old home in the pennant.

(4) Oct. 2 post

(5) I think it was a small stroke. The symptoms have improved. Small strokes are actually a yawner for me.  I've had a couple.  The whole idea starts to get old, so they're not even good for thrills. 

Anyway, I have put all my money on small stroke because the symptoms mostly cleared up in a matter of weeks. When you have a small stroke, a little part of your thinking thingy goes kaput, but the neurons around the dead spot quickly build work-arounds that are almost as good as new.  I am no longer forgetting so much or falling down wells during long hikes.  (I will, dear patients, have a full neurological workup to make sure I am ready before I return to work, hopefully in December.)

(6) A.k.a. my nasopharynx, the part where the throat comes up behind my (and your) nose.  That is the source of many of my recent troubles since that is where my radiation-abused soft tissues melted away to expose radiation-murdered bone that is allowing fungus to grow and pass through into my braincase. 

(7) So named because it was invented by somebody named Peg, apparently.  By the way, if you have a gastrostomy tube, you may want to check out Amazon. They have (not kidding) several stylish options for belts to hold the outside end of the tube.  I want mine in black lace and silk. 

(8) There are exceptions.  In the early 20th century, for 20 years fake doctor John Romulus Brinkley was famous at first for implanting goat testicles in men to treat impotence and then in men or woment for a 27 different ailments, including flatulence.  He claimed consistent success and got very rich, but he died bankrupt from multiple malpractice, wrongful death, and fraud suits. (Wikipedia on J. R. Brinkley)  Interestingly, he also was extremely influential in the history of country music and radio.  Pope Brock (Pope is his first name, not his title.) wrote a fantastic and hilarious biography of him called Charlatan.  I highly recommend it. (See Charlatan on Pope Brock's webpage) 

(9) It's the equivalent of snorting plutonium powder every day for 6 months. 

(10) The ENT Surgeon of Steel is ahead 460 matches to 430. 

(11) K/BWE FedExed copies of my MRI all over the place, we await their reading. 

*                    *                    *

This dog is steeling herself for what's coming.*

 *Thank you, TCD for the excellent pun!
-->

October Update, Part 2: Would They Please Shut Up About That?

Announcement: The night before I wrote this blog post, my wife, my parents, and my best friend told me what I already knew but needed to hear someone else say: I cannot go back to work yet. 

The neurological effects of the posaconazole have decreased sharply since the dose was reduced from 300 mg/day to 200 mg/day.  I am no longer stupid.  But as my family and my friend pointed out to me, I am still quite forgetful.  Although an absent-minded professor may be harmless, you do not want an absent-minded doctor.  

How soon I can stop the posaconazole (assuming that the med is what is causing this) and return to work may depend on an MRI in late November.  There is always a chance that I never will be able to go back. I hope it is a small one.

At the very wise suggestion of my able assistant "Robin" (the Robin to my Batman), I have told my office to stop making appointments with me completely and to change the appointments already-made to my colleagues.  It is not fair to my patients to keep putting off their appointments.  Hopefully they will be pleasantly surprised when the appointments can be changed back.  I apologize to all of my patients.  I love you, and I miss you. 

You may now return to the blog.

Written October 1, 2019:

Did you know that the USDA allows a maximum of mouse droppings per unit of cereal?  And that it's not zero? 

So, as I happily chow down on the metaphorical Cocoa Krispies of my substantial recovery from the side effects of posaconazole, and from the blockage and schmutizification of my left ear and my nose, I cannot forget that these Cocoa Krispies are inevitably spiked with a little mouse poop.  In this case, the mouse poop is that suspected cancer I talked about a few weeks ago.

Like dinner guests who stay too late and don't get the hint, the oncology nuts refuse to just go away.  At F'in' Famous Cancer Center, they believe that there may be kind of might be sort of a cancer or future cancer brewing in there waiting to reveal itself, but if there is, it isn't clear enough yet to act on.  It may or may not be the big villain in the current drama (with yummy mold sprinkles on top), but it could be a coming attraction. (1)  Worse, the cancer freaks at the University of Steel Medical Center (where the Wicked Famous Cancer Center sent my pathology slides for a second opinion) think they see actual cancer. (2)

So the quest continues.  Do we wait and see if a cancer lies at the center of this melting mass of of fungating fungus, or do we boldly go and cut out more tissue for a definitive diagnosis right now? 

Dr. Nariz has said that he does not want to take any more tissue, because he is afraid there would be heavy bleeding, and he might even pop one of my carotid arteries (not to mention possibly nicking the lining of my brain or springing a cerebralspinal fluid leak).  I suppose he has a point.  Anyway, he is highly professional, and he says he wants all the of the other great experts to weigh in on my weird case.  Naturally, the next step was a consult with The Coach at his new lair in Lummox Mountain Hospital. (3)

So last week, K/BWE and I took Amtrak to the Big Fruit's Pencilwood station and a cab to the townhouse of old family friends who have graciously hosted us through all of these crises.  We arrived very late, so we found a wonderful, somewhat yuppified 24 hour diner (A diner with wine?  Really?).  I had an enormous omelette and chocolate milkshake. (4)  Then we went to bed.  In the morning, after a diner breakfast, we went to see Dr. Coach at the Lummox.

The big guy looked more beat up than I have ever seen him.  He was unshaven and exhausted, but his intelligence and sense of humor were intact.  He shoved a small tube up my nose, then removed the tube and booted me from the exam chair.  He lay back on it himself as if to snooze.  (He would never do this with other patients, but he knows us, and he knows that we love and admire him.  I suspect he had spent the last 48 hours doing his surgical magic and was being very, very generous to see us.  I mock surgeons sometimes, but they really can be superheroes.)  He has an extremely high opinion of my team at F'in' Famous Cancer Center.  He thinks they are doing all the right things.  He too would not out take more tissue for fear of me bleeding to death (generally considered a failure by most surgeons).  He asked, though, given the controversies about the pathology, F'in' Famous should maybe send some tissue for the Lummox Pathology Department to eat.  That's a lie.  I should say examine.

But there was one more stop I needed to make--the University of Steel Medical Center in the City of Steel.

Years ago, The Fixer had told us of a mysterious surgical team in the City of Steel that would go where others fear to tread.  He warned that he would not recommend going unless I was dying.  For now, I don't think I am dying, but I am at a pretty high risk of it, for reasons stated above and below.

Neither K/BWE nor I had ever been to the City of Steel before we flew there yesterday.  We arrived at a pleasant mid-sized airport.  After 40 minutes of highway traffic in a taxi, we crossed a bridge onto a road running by a river far below to our right, and a large man-blasted cliff to our left.  The crowns of skyscrapers were just visible above the cliff-topping trees as we passed them.  It is a city literally carved from mountains.

Yesterday night, we stayed at a Marriott Residence Inn (which, along with modern, comfortable amenities, has appalling color-smear carpets and a nauseating brown/orange/yellow color scheme on the walls) right next to a neighborhood teaming with college students, and we ate the worst Chinese food ever for dinner.  This morning, K/BWE let me sleep in and brought me Belgian waffles and eggs just as the hotel breakfast service was closing.  We left our baggage at the desk and explored the area.  It's quite pretty and includes a lovely glassed-in conservatory and botanical garden in the style of the Crystal Palace.

In the afternoon, it was time for my appointment with the last expert. An old pal of The Coach, he is on the cutting edge of otolaryngeal surgery. (5) 

We navigated the ratless maze of the University of Steel Medical Center and arrived at the proper office.  At registration, the pleasant administrative assistant handed me--wait for it--the SNOT survey (Sino-Nasal Outcome Test).  Whoever named that form has my undying admiration! A nice assistant soon brought us to an exam room and took my vitals. Then, a very reserved (he didn't laugh at ANY of my jokes!) ENT fellow entered to ask questions and to use a mini vacuum cleaner to remove the schmutz behind my nose that was obscuring the mass.  He left to brief his superior.

And then, in walked The Surgeon of Steel.  Tall and slim, he resembles a more dignified version of Bill Nye, the Science Guy.  He took the schnozoscope (actually pharyngoscope, but who cares?), slid it in, and looked at the enemy.

He wants it.  He wants more tissue to make a definitive diagnosis of cancer or not cancer, and he thinks he can take it without killing me.  He proposed something no one has proposed before--a trip to Narnia.  No.  Not that.  He proposed an angiogram.  Like the one I got for my nose last summer, it would allow him to map blood vessels--this time to the mass instead of my schnoz. (6)  Like before, he would use the angiogram to visualize the blood vessels that feed the mass, and he could release beads to block them so I wouldn't bleed out when he removed a piece of it.  Incidentally, the map created might help him avoid popping my carotid arteries (unpleasant prospect as stated above).

But what he said next made my heart sing.  If he did not find cancer on frozen section, and if he deems it safe and viable to do so (i.e., not cancer or Zod knows what), he would take out as much of the unhealthy tissue (including, I dare to hope, at least some of that dead bone?) as possible and then cover the area with healthy tissue from elsewhere in my body to cover the hole. (7)  This has been my fondest dream for nearly a decade, ever since the radiation-burned mucosa covering my bone of my skull rotted away due to radiation, letting the burnt bone itself die.  This wasteland behind my nose is the source of my notorious death breath and countless, sometimes life-threatening, infections.  This year, it allowed the fungus to invade the Holy of Holies--the brain case.  If the fungus can get there, anything can.  It terrifies me.  'Anything' could kill me, and fast.  But, maybe, just maybe, he can fix it for good, or at least for a long time.

His plan has not been finalized.  He needs to review my films and discuss it all with his partner, The Neurosurgeon of Steel.  It's a dangerous, rigorous surgery, and if they do the flap, could last well over 10 hours.  He may change his mind.  He might have something better to do with his time.  And it might be cancer, in which case, I am in a heap of trouble.  But today, it doesn't matter.  He said those magic words.  Then I said, "I love you," and the Surgeon of Steel smiled.





(1) Coming in December, The Singing Carcinoma, starring Tumoriffic Tom, K/BWE, the Professor, and some unfortunate oncologist!  Parental discretion is advised.

(2) I hate to admit this, but I didn't even know they were a thing.  Yet it turns out that the University of Steel Medical Center is one of the top 10 hospitals for cancer in the US. 

(3) If you don't remember The Coach, he was the bluff and dauntless head of the A-Team, including Dr. Fixer, the suave and kind reconstructive surgery titan, and Mr. Rogers, the deftest, sweetest neurosurgeon and human being on Earth.  They saved my life and my right eye in 2005.  (See Glossary.)  Unfortunately, the A-Team broke up when The Coach moved on to Lummox Mountain Hospital.

(4) A major advantage of having a chronic inflammatory process such as an invasive fungal infection or cancer is that you can eat like a glutton and not gain an ounce.  In fact, I have lost 20 pounds since May.  I should tell Dr. Oz about this miracle. 

(5) Get it?  'Cutting edge of surgery?'  Oh, I crack myself up!

(6) Don't get excited.  Schnoz is just Yiddish for nose.

(7) A frozen section is how surgical teams make a preliminary diagnosis.  A specimen is sent straight from the operating room to pathology where it is flash-frozen solid.  It is then sliced thinly like ultra-pretentious sandwich meat and examined under a microscope (and then sold to Subway at a premium price).  It cannot yield a final diagnosis.  That takes weeks of marinating in secret herbs and spices as well as dozens of genetic tests.  But when you have to decide with the patient still in the OR, it's all there is.

*                    *                    *

Things may be looking up!

(